Children's Understanding of Their Illness.

Over the past two decades, general acceptance has been gained for the idea that children with cancer should be told about their disease (Agranoft and Mauer, 1965). There is still, however, a relative dearth of systematic knowledge about how young children comprehend or make sense of this well intentioned open approach. (Brewster 1982, Eisler 1984). In this preliminary study setting out to describe young children's understanding of their disease, three principal questions are addressed:

Over the past two decades, general acceptance has been gained for the idea that children with cancer should be told about their disease (Agranoft and Mauer, 1965). There is still, however, a relative dearth of systematic knowledge about how young children comprehend or make sense of this well intentioned open approach. (Brewster 1982, Eisler 1984. In this preliminary study setting out to describe young children's understanding of their disease, three principal questions are addressed: 1) How do children in hospital acquire knowledge about cancer?
2) What do young children understand about their own illness and its treatment?
3) To what extent is comprehension important? METHOD a) Sample There were 25 children (13 boys and 12 girls) in the study, with an age range of 2-11 years. Ten of these children had leukaemias, eleven had solid tumours, and four, brain tumours. Seven of the children were newly diagnosed and were observed over the first month postdiagnosis.

b) Procedures
The techniques used to obtain information about the children's understanding of their illness were: 1) direct unstructured observations of the children in hospital by a participant but non-directive observer; 2) informal interviews with the children in which they were encouraged to talk about what was wrong with them, and about the treatment they were receiving. It had already been established that the interviewer/ observe1-(CK) had come to the unit in order to learn about chilhood cancer, and thus the children, as veterans, were in a position to provide her with information. c) Time Sampling The material in this study was all gathered from the Bristol Royal Hospital for Sick Children between July and September 1984. The observations and interviews spanned across playtimes, treatments (bone marrow tests, lumbar punctures, X-rays and radiotherapy), meal times, doctors' rounds, friends' visiting times and television watching, in an attempt to get an overall picture of the children's world in the hospital. The median time spent with each child was 4 hours (range 1-15 hours).

HOW THE CHILDREN LEARIMT ABOUT CANCER
All the children in the study were initially told that they had cancer by one of the consultants on the unit (M.M or T.O.) or by their own parents, who had previously talked with a consultant. During this initial explanation the following areas were dealt with: which part of the body has something wrong with it; how this was discovered; what is going to be done about this; and how will it affect you (the child). In all cases the actual name of the illness* i.e. leukaemia, lymphoma, was used. This relatively f?rj mal occasion was rapidly followed by a series of inform3 encounters with other people in the hospital. Withou exception, the newly diagnosed children were seen to be actively seeking out information at this stage, and deed, appeared to be extra-receptive to any cues regar"' ing their illness. Within one week of hearing their diagn?' sis the children all showed a marked increase in the'r vocabulary, i.e. using newly acquired words such aS 'platelets', 'radiotherapy' and 'biopsy' in an appropria10 manner, as well as acquiring a considerable knowled9e of physiology and pathology.

FOR EXAMPLE:
Marlene (8 years) when first told that she had leukaem13 did not know anything about the functions of blood in her body. She did know the colour of blood, but nothing else. By the end of the first week she had grasped ^ basic concept that different 'bits' of blood perform di^e rent functions and that in her own case these function5 were not being carried out adequately.
The children were therefore picking up information which was of immediate relevance to themselves. TheY were learning about cancer from all those around at time: the physiotherapists, nurses, play-leaders, dome5 tic staff, and most importantly, the other patients on the ward (other children with cancer) and their own parent5' it should be stressed that this information came in form of non-verbal as well as verbal messages. GameSj pictures, puppets and observations of the hospita routine were clearly contributing to the children's faC finding ventures. The very first experience of any trea t ment or procedure was quite understandably of 9re3t importance in establishing a pattern for future occasion5, FOR EXAMPLE: { Imra (6 years) was fortunate enough to go for her f'r5 radiotherapy session alongside Kirsty (4 years). Kirst'' who had already experienced several treatments, to?' the situation in hand. She introduced Imra in a matter-^ fact way to the staff, the equipment and toys at "1 radiotherapy centre and then calmly proceeded to setf1^ down for her own treatment. Imra henceforth looke forward to her visits to the RT centre. Qp eptainly the children aged five and upwards could ne ?priately categorise as good or bad words such as the Pen'c' remission, relapse and pyrexia. Along with Parents, these children could also be seen anxiously the results of vital tests such as bone marrows k biopsies. These somewhat abstract indicators of ^?"ovement and decline in health carried even more '9ht than how the child was actually feeling.
'^EXAMPLE: na (9 years) "I'm all hot and sticky but I An .
haven't got a temperature." Ie (8 years) "The X-ray said the lump was still there even though d) r you can't feel it any more." he f-Use ancl e^ect '"nk between chemotherapy and changes in appear-Un(j6 SUch as hair loss and puffy cheeks were accurately anHerst?od and verbalised by the children of five years over.

EXamplE:
^ Years)' when asked directly by two visitors to 0lJt h ^ w y ^er ^a'r was so reP''ec' "'t s a" come I ecause of my treatment, the Vincristine does that." he^^tte (5 years) was being sick whilst the observer r6r^ a bowl for her, making sympathetic noises. Lynette thai^ed "I'm on my treatment (chemotherapy) again, Ths why-" di... 6 older children, in trying to explain their disease 9 interviews, often sounded like research scientists. F^MPLE: hi ^ears)-"My cancer is a disease where some of l"his ?d cells that fight disease don't grow properly, ^eans that resistance to any kind of illness in my body is extremely low.

DEVELOPMENT AND REGRESSION
Many of the children appeared to be exhibiting an understanding of their own disease which far exceeded expectations for their age and stage of development. Most noticeably the youngest children in the sample showed a marked acceleration in their cognitive development. The use of new words and ideas has already been mentioned. In addition, a mature understanding and empathy for other children going through the same experiences as themselves was shown.
FOR EXAMPLE: Jenny (6 years), upset at the prospect of having a central venous catheter inserted, was comforted by Lorraine (5 years). Lorraine, who already had a line in situ, said "It's just like a worm .. . and you don't feel it going in." However, at the same time as these advances, the children were also showing all the classic signs of regression seen in hospitalised children, such as wanting to be dressed and fed, returning to a bottle or dummy, and wetting the bed at night.

IS IT IMPORTANT FOR CHILDREN TO UNDERSTAND?
Observations of children in this study point to some of the possible reasons why it is vital for children with cancer to understand about their illness. a) Misunderstandings were associated with high levels of anxiety for the children. Malcolm (9 years), having been told that he was going to be 'locked off' from his drip for the afternoon, looked distinctly uneasy. b) By coming to understand why they were receiving treatment, children realised that they were special, and cared for, both by their parents and hospital staff. They were not simply being punished for being ill in the first place. An understanding of the situation allowed a determined compliance on the part of the child to necessary yet unpleasant procedures. FOR EXAMPLE: Thornton (2 years) unhesitatingly held out his hand for a blood test whilst at the same time crying at the prospect of a painful needle prick. c) The fact that children with cancer are contributing to each other's understanding makes it doubly important that each child should understand. Misunderstanding could potentially spread amongst the children on a ward.

CONCLUSION
From this preliminary descriptive study looking at the ways in which children with cancer obtain an understanding of their disease, several practical messages emerge of relevance to anyone in contact with these children.
1) The very early days after diagnosis and the initial experiences of hospital procedures are vital. It is especially at this stage, when the child is actively seeking out clues about hospital life, illness and treatment, that coherent and non-contradictory messages are vital. Good communication between all hospital staff in contact with children and their families can go some way towards ensuring this.
2) The evidence that children's ability to understand is linked with their age and stage of development (Bibace & Walsh, 1980) is reinforced by this study. Whereas the under-fives perceive their world in very concrete terms, the older children grasp abstract concepts of categorisation. Children with cancer do make dramatic leaps forward in terms of their intellectual functioning which coincides with the idea of accelerated developmental spurts seen at times of stress by Anna Freud (Freud, 1965). However, alongside the children's slick use of medical jargon there may be concealed areas of ignorance. Regression in other aspects of children's behaviour should also be anticipated and dealt with calmly. 3) Young children's understanding often comes from direct first hand experience and their play situations. With sensitive staff available, these opportunities can be utilised as moments for learning. For example, a playroom equipped with 'toy' IV drips, radiotherapy machines, nurses' uniforms and so on can facilitate the exploration of such areas. 4) It is important for children with cancer to understand. Misunderstandings can lead to unhappiness and anxiety which quickly transmits itself to other children in the ward. An understanding of the necessity for treatment enables better compliance and appreciation of the care that is being lavished on the child even during times of pain and discomfort.